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Tracing Your Health Roots

Plant a Health Family Tree Now, and It Could Bear Fruit for Generations

By Alison Buckholtz
Special to The Washington Post
Tuesday, November 16, 2004; Page HE01

When Deborah Goldstock Ringel was pregnant with her first child, death was on her calendar. A "death brunch," to be specific.

That's what she termed the meal at which she gathered relatives to ask if anyone had inherited medical conditions that might put her growing family at risk. Ringel, now a mother of three, spent most of her first pregnancy believing that nothing more serious than acne plagued her DNA. But an offhand comment to her father rattled the bones in her ancestors' closet.

_____From The Post_____
Genetics and Disease: A Primer

"I spoke to my dad after a [doctor's] appointment, and told him that I filled out a form which asked about family medical conditions, such as heart disease and high blood pressure," Ringel remembered. She mentioned to her father that her checklist was completely clean, and then got a shock: "[My father] told me that both of his grandmothers died young from high blood pressure, and his grandfather had diabetes. I realized that I simply didn't know what medical conditions were in my family."

As her due date neared, Ringel, a lawyer who lives in Cleveland Park, vowed to press her relatives hard on questions about their health. Coincidentally, Ringel's husband was elbow-deep in genealogical research at the same time, and the two combined their efforts to create a health family tree. Like a classic family tree, a health family tree shows branches connecting siblings, parents, grandparents and other kin. But it also lists inherited medical conditions and other health information pertinent to blood relatives.

Many health professionals -- including U.S. Surgeon General Richard H. Carmona -- believe these medical family histories, with their potential for preventing or mitigating disease, are critical elements in medical care. Carmona's office, in partnership with the National Human Genome Research Institute (NHGRI) and other agencies of the Department of Health and Human Services, has just launched a free Web-based software package to help families track their medical histories.

The Family History Initiative, as the project is known, debuts close to Thanksgiving because Carmona has declared the holiday to be the first annual National Family History Day.

Today medicine is "more of an assembly line, with less patient-doctor interaction," Carmona said, which means patients can no longer count on their doctors to take a lengthy family medical history and integrate the information into diagnoses. "We want to recapture that [old] relationship, tempered with reality and the new economic situation. So we created a generic historical instrument that families can fill out on their own and take to their practitioner. With that, we have a better-informed citizen, and it puts the demand on the practitioner to incorporate the patient's medical history into their care."

Health family trees are not a new idea; many doctors advise their patients to track their medical history. It's not hard to find instructions and free Web-based templates. So why this national push?

The program grew out of a casual conversation between Carmona and Francis Collins, director of NHGRI and leader of the Human Genome Project, the massive effort to decode the genome that was completed in 2003.

"We talked as two friends and colleagues concerned that it might take 15 to 20 years for the knowledge [of the genome] to get from the lab to the bedside," Carmona said. "We asked each other, 'Can we afford to deny the public this information?' The answer was no, and the idea for the project blossomed from there."

Collins was enthusiastic about involving patients in entry-level genetics.

"All medical students are taught the importance of these histories, but it's rarely practiced," Collins said. "We as health care providers have not done a good job serving our patients with this approach. The Human Genome Project results make a precise evaluation of risk possible now, and it means that health family trees are more important than ever."

Health professionals overwhelmingly agree that awareness of medical flashpoints can be lifesaving. "Knowing your family medical history can help the health professionals you see to determine if you should be offered medical screening that would not normally be conducted," said Robin Bennett, a genetics counselor and manager of the Medical Genetics Clinics at the University of Washington in Seattle who was involved in creating the Family History Initiative.

Portrait of a Family

The new software tool, "My Family Health Portrait," (available at www.hhs.gov/familyhistory), is intended to help individuals organize health information into a printout that can be taken to the family doctor and placed in the medical record. The software guides users through a series of screens to help them compile information about six common ailments (including heart disease, cancer and diabetes) as well as other conditions, all of which may have a genetic basis.

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